Our mission is to accelerate full spectrum research to cure Beck-Fahrner syndrome (TET3 deficiency) and to empower affected families with information, knowledge, and connectivity. Our organization supports this mission by prioritizing and focusing on efforts that:
- Increase awareness and understanding of Beck-Fahrner syndrome
- Advance access to a Beck-Fahrner syndrome diagnosis
- Empower, connect, and support affected families
- Establish partnerships among medical, scientific, and patient communities
- Accelerate full spectrum research to develop a cure for Beck-Fahrner syndrome
The Beck-Fahrner Syndrome Foundation was established in 2021 shortly after our daughter was diagnosed with Beck-Fahrner syndrome at the age of 3. Upon receiving her diagnosis, there were only twelve documented cases of Beck-Fahrner syndrome in existence. Naturally, we were given no information, Google searches came up empty, and we had little indication of what the future held. The hardest part about receiving the diagnosis, was the lack of a “space” out there to find and connect with other affected families. I decided to form the Beck-Fahrner Syndrome Foundation so that no other family has to go through that same experience. The Beck-Fahrner Syndrome Foundation was created as a means to provide affected families with information, support, and hope as they navigate this challenging journey. Currently, the group is completely led by the volunteer efforts of parents of children affected by Beck-Fahrner syndrome.
Our logo – the violet
The violet is known to be a very adaptable, and hardy flower. Often the first to bloom in the late winter, and known to be able to withstand and thrive in various climates. It is with this spirit that we chose the violet to represent the versatility and strength of families impacted by Beck-Fahrner syndrome, and our hopes that they, too will thrive in any environment. The violet also represents the middle name of our daughter, who continues to be a source of inspiration and hope for our family.
Watercolor logo by Angelina Maria Designs